Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
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Saturday, October 13 • 8:30am - 8:45am
Improving Provider Readiness For Young Adult Transitions: The (8) Behavioral Changes Providers Can Make To Improve Transition Outcomes

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Prof. Teresa Works- New England Sickle Cell Institute, UCONN Health

Objective: Sickle cell disease (SCD) is a genetic blood disorder estimated to impact about 1 in 400 individuals of African American decent in the United States. SCD can typically cause both acute and chronic pain crisis. Secondary co-morbidities of SCD include risk(s) of infection, strokes, splenic infarct, pulmonary embolus, acute chest syndrome and other acute medical conditions, which can dramatically increase risk of death. Historically, children with SCD did not live until adulthood. However, beginning in 1990’s, the utilization of antibiotics with children, dramatically decreased mortality in children with SCD. As a result, most now live until adulthood. Due to more adults living with SCD there is an increasing need for comprehensive teams of adult sickle cell providers to provide care to these young adults, who are aging out of pediatric care. Ideally, adult and children’s comprehensive SCD programs collaborate around effective and efficient transition programs as they facilitate young SCD adults transitioning to adult SCD care. Studies indicate that those young adults not transitioning to an adult provider are at higher risk of mortality.
Much of the research focused on the transition process has been on young adult readiness for transition, including the readiness of their families. However, there are behavioral and structural changes that can be made through coordination of care between adult and pediatric providers, which can dramatically improve transition outcomes regardless of adolescent readiness. These successful transition outcomes are demonstrated by the collaboration between pediatric providers at Connecticut Children’s Medical Center (CCMC) and the adult New England Sickle Cell Institute (NESCI) at UCONN Health and the changes implemented to their transition program over the past six years.
Methods: A retrospective analysis of CCMC patients seen in transition clinic and referred to the NESCI was performed from 2012- present by the CCMC registered nurse and the UCONN Health social worker, to assess how many patients had successfully transitioned to UCONN of those referred. For those patients who had not connected with a UCONN provider, CCMC staff attempted to contact them to ascertain if they had been connected to another hematologist or if they still needed an adult hematology provider. If a provider was needed, and the patient was willing, an appointment was scheduled at UCONN. A spread sheet was created to track where referred CCMC transitioning young adults were in the transition process. Clients who missed transition appointments were contacted by CCMC and the importance of transitioning was re-iterated. UCONN SW staff apprised CCMC of patient attendance, no-shows or cancellations at UCONN tour and initial appointments, who would then reinforce transition to UCONN and / or schedule a termination appointment with the transitioning young adult to celebrate their “graduation” to the adult provider. In this process, consistent behavioral changes on the part of the providers to ensure transition were implemented with excellent results.
Results: Use of this close tracking system and improved communication between the two institutions caused a 96% success rate in those young adult patients being referred to the adult provider successfully transitioning to care, from the period of 2012-2018 regardless of adolescent “readiness”. Provider focus on adolescent and young adult readiness for transition is important in terms of long term implementation of good disease management, however, it need not be a negating factor in the successful transition of young adults from pediatric to adult provider where disease management skills can continue to be worked on and develop over time under the care of the adult SCD comprehensive clinic.
Conclusions: Goals of adolescent “readiness” for transition are often abstract, difficult to define and vague in terms of pediatric and adult SCD provider team agreement on when patients are ready to transition. Changes on the part of the providers are in many ways easier to implement and can improve communication, provide consistent messages to patients and can lead to a smoother transition process. Improved success with transitioning pediatric SCD patients to SCD adult providers, can lead to better SCD health care and health outcomes.

avatar for Teresa Works, MSW, LCSW

Teresa Works, MSW, LCSW

Clinical Social Worker, Property Management, Psychotherapist, UCONN Health
Teresa Works, LCSW, ACSW is a social worker with 25 years experience in medical and behavioral health settings. She is a doctoral candidate in social work research at the UCONN School of Social Work, where she also is an adjunct faculty member.  Teresa has been employed full time... Read More →

Saturday October 13, 2018 8:30am - 8:45am EDT
Constellation CD